Smith-Lemli-Opitz/RSH Foundation

General Organizational Information

Organization Name:

Year Established:

1990

Type of organization:

Condition(s)-specific organization

Mission Statement:

The Smith-Lemli-Opitz/RSH Foundation is a non-profit organization dedicated to supporting families, individuals and professionals dealing with Smith-Lemli-Opitz syndrome. By providing a network of ongoing communication, funding related research, and raising awareness, we are committed to enhancing the quality of life of affected individuals while improving on current treatment methods and striving towards a cure.

Status of organization:

Incorporated non-profit

Professional/Medical Board?:

Yes

501(c)3 Status?:

Yes

Paid staff?:

Board of Directors?:

Yes

Serves the following conditions

Diseases:

Smith-Lemli-Opitz Syndrome

Organizational Contact Information

Title:

President

First Name:

Gretchen

Last Name:

Noah

Address:

PO Box 10598

Fargo, ND, 58106

United States

See map: Google Maps

Phone:

+1 7012350417

Email:

gnoah@smithlemliopitz.org

ListServe:

SLOS@yahoogroups.com

Website Address:

http://www.smithlemliopitz.org

Resources and Services Provided

Languages spoken:

English

Printed materials available in:

English

Information provided for:

Families of affected individuals

Care providers

Health care professionals

Researchers

The public

Teachers

Students

Range of services include:

Referrals to research studies

Referrals to matching individuals/families

Peer Support

Genetic information

Referrals for non-medical services

E-mail list

Educational materials include:

Fact sheet(s)

Pamphlet(s)

Website

Newsletter

Research updates

Membership directory

Conferences/workshops for:

Affected individuals and/or families

Researchers

Research Management:

Linking researchers and families

Participant recruitment

Awarding research grants

Providing information about clinical trials

No Revisions:

I have reviewed my listing and there are no updates to be made at this time.